Amyotrophic Lateral Sclerosis (ALS) is a relentless neurodegenerative disease that causes low health outcomes, severe impact on the quality of life of both patients and caregivers and the need for social support. People with ALS experiment a fast process of function loss related to walking, using upper limbs to daily activities, speaking, eating and, ultimately, breathing.
In Portugal, the lack of aware and coordination of ALS care pathway prevent patients from early and efficient support, contributing for a significant delay in diagnosis and treatment, as also to social asymmetries in social and health care.
Given the complexity of ALS and the need to identify the main burden points in care pathway, either for patients and their families, VOH.CoLAB is collaborating with Associação Portuguesa de Esclerose Lateral Amiotrófica (APELA), association dedicated to ALS patient care support, to:
- Characterize ALS patients’ pathway in the Health system and the social and economic burden of the disease;
- Map an integrated and coordinated care pathway process, including the social sector.
Following the current trend of patient-centered healthcare, we are co-working with APELA, the patients’ association dedicated to ALS patients’ care.
To support our research, Professor Dr. Mamede de Carvalho and Professor Dr. Rui Mesquita are collaborating with us.
